Coping with Psoriatic Arthritis

When you're newly diagnosed with psoriatic arthritis, it's common to feel alone. Forming a strong support system is important!

Family

If you're lucky, family will be an awesome, built-in support system. Thankfully my immediate family has been that way. You will probably have to educate some of your family in order for them to understand your condition, and the need for support that comes with it. You also can't expect them to know exactly what you need. If you need a listening ear, if you need a ride to the doctor, if you need help with your housework or childcare, if you need anything at all, you have to ask. In the early days after your diagnosis, you may have to explain why you need help with things you used to handle yourself with no problem, but after a while, "I'm in a flare" will be all the explanation you need.

Friends & Facebook

You may need to be more selective about the friends you turn to for support. Undoubtedly your very closest friends will be interested in learning more about psoriatic arthritis, and helping you when they can. Be wary of spilling everything to the acquaintances known as "Facebook friends" though! Unfortunately with the little known nature of this disease, it's easiest (and most fun) for folks to label you a hypochondriac and a drama queen, rather than educating themselves and being understanding.

There are facebook groups for Psoriatic Arthritis (here's one), but be aware that most groups are public. That means that regardless of your personal security settings, anyone can see what you post there. With facebook's current news feed set up, your posts and likes in that group can even show up in your "friends'" news feeds, despite them not being members of the same group.

Online Support Groups

Fortunately, there are online support groups that come much closer to anonymity! TalkPsoriasis is a message board sponsored by the National Psoriasis Foundation. Although the site of course serves the needs of psoriasis patients (which most of us with PsA are as well), there's a section specifically for discussing psoriatic arthritis.

If you happen to have spondylitis (inflammation of the spine) as part of your disease presentation, the Spondylitis Association of America's message board is a great option too! Most members have ankylosing spondylitis or undifferentiated spondyloarthropothy, but there are a number of PsA patients who frequent the boards. The AS and USpA patients share many of our experiences, so you don't have to only seek out those with PsA and spondylitis.

There are other privately run PsA forums around the web, but I'm most comfortable with using the forums sponsored by these non-profits.

Local Support Groups

The NPF and SAA also sponsor local support groups. This is an opportunity to meet fellow patients face-to-face, which is strong confirmation that you're not alone in having this disease. See a listing of support group locations for the NPF and SAA.